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Comment by maria toscano on March 29, 2013 at 5:20am

Wow, that was ridiculously long! Sorry about that!

Comment by maria toscano on March 29, 2013 at 5:05am

Hello,

Sorry about the delay.  I have been quite busy with school and life.  Yes I do have accommodations in school though I only started using them a year ago. I use them sometimes for extensions on assignments or extra time on tests which is especially helpful.  It takes me a lot longer to study for classes and write papers.  I am an English major so I guess the accommodations might not be as necessary for me as it is for some of your degrees.  It took me much longer to get up the courage to go back to school than you though.  I waited about nine years (I dropped out of school at 15 years old during all my brain tumor stuff).  The main motivation for going back to school for me was the same as you mentioned, "If I can do this I must me normal!"  I now realize a piece of paper wont change my life but I am still glad I went through with it and I do believe it has given me a bit more confidence.  I am also horrible with directions and I actually only got my licence at twenty-five. I waited to do a lot of things later in life because I felt intimidated and wasn't sure if I was capable enough after my surgeries.  I think with driving, I do alright but I get distracted very easily so I don't like to have other people in the car with me.  I also have a lot of anxiety from my tumor experience which occasionally manifests itself in panic attacks while I'm driving. 

Its funny because I used to try so hard to mask my issues early in my academic career and just in life in general.  But now when I feel like it is so important to communicate my problems and difficulties for support, everyone keeps telling me I'm fine.  My family kind of thinks my problems are all in my head.  Sometimes it makes me feel crazy like maybe they are right.  Its hard because its not like a broken arm or something people can see.  People make these external judgments based on superficial aspects of my life and don't understand what is going on.(Not that I can expect them to)  I just feel that my tumor has isolated me so much.  It is great that you have a support network, not to say that I completely don't.  I have a great family but I guess there is sometimes only so much that they can empathize or understand.  This site has also helped give me validation and just helped me be able to feel my feelings about my situation which sometimes is enough even if I can't fix everything.  Lately I have been having heightened mental processing issues which hinder my communication.  This happens occasionally but it is such a pain.  I have all these feelings and thoughts that are just stuck in my head and I can't express myself.  It feels so claustrophobic.  I also get totally overwhelmed by sensory stuff during these times.  It makes me feel autistic, lol.  People are talking to me and I'm like, yep, I have no chance of coming off sounding like a half normal person.(although, its probably not as bad as I feel it is)  I guess that is why I hesitated to write back as well though.  I felt like I would write something that sounded weird or something.  But I guess that's what this place is for, a place to not worry so much about being judged for your cognitive challenges.

 So I guess your surgeries were much more recent than mine.  Perhaps you are not quite done healing. I know for me, many years after my surgeries I dealt with some more serious issues than I do now. (I'm 11 years out - since last surgery)  Anyway, thanks for getting back to me.  It's really great to have someone to relate to.  I hope between this site and your family's support that you are able to get a little closer to feeling 100%.

Comment by Pamela Bishoff on March 18, 2013 at 3:59pm

Maria,

Just curious as to how you managed in school?  Were you connected with the Department of Disabled Student Services to get accommodations?  I started my second Master's program 6 months after my tumor removal and could never have gotten through the program without the accommodations.  Thinking back going through the program was crazy. Because school was always something that I excelled at, I thought if I can do this then I must still be "normal", the same, whatever. Ha! I finished the program 3 years ago and never did get a full-time job with that credential, which is probably a blessing because things have seemed to get harder for me.  I am also much older than you, 54 to be exact.  12 hours a week working is my limit and I do get to use my skill set from both my license and credential, but I struggle often.  I am finally admitting to myself and others, such as my husband and family who I have kept in the dark about my difficulties that I am as capable as I used to be. I liked your analogy of running at 120% just to keep up with others 80% because that is what I have been doing and not letting others close to me know and I am tired.  I asked my husband to buy me a GPS for my car because I have difficulty with directions now.  This was very painful to admit. I have to say, this site has given me the courage and validation to finally realistically embrace what happened and be okay with it. 

Comment by maria toscano on March 16, 2013 at 1:49am

Pamela,

Wow, I really know how you feel.  I also have good days and bad days but I deal with all of those problems everyday almost.  It is sometime hardest when I go through a long streak of good days and almost feel normal then come crashing down again on a bad day and feel like a sub-human zombie.  I am also extremely frustrated with word recall.  It so hard to have a good flow of conversation when you keep forgetting words mid-sentence.  It has wreaked havoc on my social life!  I feel like I used to have this big blackboard in my head that outlined my thoughts and now its just blank and it makes it harder to communicate spontaneously and express myself.  I feel like people don't see who I really am because there is so much that I can't express which gets left unsaid.  I am a slow reader and it is harder for me to retain subject matter than others but I am trying my best.  This is my last semester in school. (I started school late at 24 due to my tumor.  I am now 29.) I am wondering if I will be able to actually hold down a job in the real world with these sort of cognitive challenges.  Hopefully there is a place for me out there.  Sorry this is not a super positive message but I am sort of excited to talk to someone with my specific issues and I just kind of wanted to relate. For me its been 11 years.  I know what you mean about feeling less than.  I always feel like I have to run at 120% to equal up to people running at 80%.  I feel like inside I am the same valid person but so much just gets lost in translation you know?  I hope things improve for you.  I actually really do feel as though I am constantly improving year by year.  I was just was excepted into the honor society at my school, which is the top ten percent.  I think the challenges in my life have made me more determined to prove myself.  I also in some ways feel privileged to have gone through my specific health issues because they gave me a valuable life experience that some will people never get to go through or understand. All the best,

Maria

Comment by Pamela Bishoff on March 15, 2013 at 7:27pm

I have felt so alone the past 6 years kind of like an outsider looking in until I found this site. I too get bad head aches, actually migraines.  But I am most frustrated by my inability to recall words sometimes when speaking. Often I really have to concentrate on what word I want to say next. And my memory is nonexistent when it comes to retaining subject matter.  I can read something and not be able to tell you much about it a few hours later. This of course is worse with fatigue. Hard to imagine I am a licensed and credentialed professional with 3 degrees who now only works 12 hours a week and that is my limit. I used to be an avid reader, not any more.  For someone where thinking and education was primary, this has made me feel less then.

Comment by Edward Slas on June 2, 2012 at 8:01am

I'm a engineer at a small company, a husband, a dad to two kids, and have a inoperable 'benign' BT in 1/4 of my brain...talk about headaches! Here are some things I learned that helps headaches:

• Yoga - nothing fancy. Quite time stretching
• Tramadol - powerful, non-narcotic pain killer, works when OTC pain killers fail.
• Get a 30 degree bed wedge/pillow. Keeping your head elevated when lying down helps a lot

Comment by Paul Gerrard on May 26, 2012 at 8:33am

I have noticed that a lot of stress will trigger things off. One of the biggest loss I feel is control over my life, feel like I am just rolling along waiting or the next shoe to drop. Now just the other day a buddy of mine who works at the Fire Academy with me was diagnosed with a tumor at the base of his skull next to the spinal cord. A chief officer told me that makes 4 guys who have had or have brain tumors. 2 have passed away!  i guess I am the lucky one. Now something else to stress me out!

Comment by Beth Rosenthal on May 26, 2012 at 5:59am

oops! here not, hear. I hate spelling errors.

Comment by Beth Rosenthal on May 25, 2012 at 9:35pm

Paul, congrats on 3 years. I never heard people celebrating their cranaversaries before, until hear. It's 26 yrs. for me.

Comment by Beth Rosenthal on May 25, 2012 at 9:33pm

It's very difficult to move on, for me anyway. The side-effects are constant reminders: for me it's my left sided weakness, motor skills loss, hearing loss & chronic pain. It's not as bad as a stroke but, like that and with chronic pain.  I've learned how capable I am over these last few years, regardless of the tumor. Being diagnosed so young affects your career, everything. So finally understanding how capable I am has meant so much to me. Right now it's really hard for me to be happy with my life: I don't have the support I want ( only my parents), a few friends who understand my struggles, and I need to work on my social/dating life. And I need to figure out how to be happy. I was when I was young, before my diagnosis.How do you all find happiness post diagnosis? How do you move on and not be aware of the tumor?

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